In mental health we use the butterfly as a symbol of transformation, rebirth,
an event to focus the consumer on the future. We could well use the same symbol
for women diagnosed with DCIS.
There you are chomping happily on your leaf as a caterpillar going about your
normal day to day activities, when BANG, you are told that you have cancer!
Immediately you are plunged into the darkness of a cocoon. The darkness is a
darkness of fear, of limited information, of rapid uncoordinated decisions and
long reaching consequences.
The butterfly may sound to you a very dramatic analogy, but as health workers it
is terribly important to know how the consumer really feels.
Let me tell you my story.
I was out in the sunshine chomping on my leaf last October when out of the blue
I began one of the most difficult journeys of my lifetime. from my diagnosis,
which was delivered by a very caring and thoughtful registered nurse at the
Cottage screening centre attached to RNSH I fled weeping to my GP. My first
thoughts were that I wanted to graduate! I'd finally achieved a childhood dream
to become a occupational therapist and having counted off the four years being
first an occupational then a thera and finally a pist (as my family dubbed by
progress), I really wanted to get to wear that funny hat and gown!
My GP arranged for me to see the best breast man in Sydney, (a term I would have
found highly amusing in other circumstances) the following day.
Mistake number one.
I went alone.
Be aware of how important those extra ears can be when discussing surgical
options. I heard only partial mastectomy, removal of a cone sort of shape,
slicing off the nipple - I heard only mutilation, lop sided and nippleless. It
was so cold and dark and lonely in that cocoon.
Sure I had a handful of booklets and a list of faceless telephone numbers but
perhaps the confined space of my world also confined my thinking.
So, in that state of mind I made my first decision
OK do it, do it soon.
I was booked into a private hospital for the following Tuesday.
I came home and with the help of my number two son, hit the Internet.
The following Tuesday I presented at the hospital with a list of questions in my
hand and terror in my heart.
Now, this is where some of our health services really need an educational
workshop!
I immediately lost my identity and become an income generating partial
mastectomy listed for bed 47C. Let's get all the money bit organised then sit
around like Browns Cows waiting for the relevant bed number to be called up to
the ward. Finally 47C was called, that's Anne, and up I went about 10sh for an
approx 4 - 4:30pm listing. The standard list of admission questions were
administered without any thought. After all this was an admission and the
paperwork had to be all ship shape and apple pie order. So I was asked such
tactful questions as have you ever had cancer? - what the hell did she think 47C
partial mastectomy meant? and, are you depressed? - no dear I'm over the moon
with excitement! Care to swap sides of the sheet?
Anyway to cut the story short I was home again within 4 hours of completion of
the job, with none of my questions answered.
I had left my husband chief in charge of my precious list as I figures that when
the best breast man in Sydney came down while I was in recovery to report to him
then he would be better informed and able to answer. The message I got was that
I had read too widely, not to worry, everything was fine, and I could remove the
tight bandage on the morrow and report back to him in a week.
Very definitely still firmly ensconced in that little cocoon!
Would you believe that I made the same mistake again?
I took only one pair of ears with me into my follow up consultation.
My some drove me to the surgery, but I didn't want him in there for the actual
examination and staple removal, (not exactly appropriate) but it was during this
procedure that discussion took place. Oh well, I was assured that chemo or
radiotherapy were not indicated. Again I trotted out my questions, had a couple
answered, but I was reassured that the Australian systems were different from
the English - British articles being my main source from the Internet, and that
there was no need for concern. With a metaphorical pat on my shoulder and a
scrip for Tamoxifen I was advised to make an appointment for a return check up
in 6 months time.
By this time I was beginning to wonder what was so astounding about my
questions. Path report provided the answers for the types of cells, the size and
the margins. The 0.5mm margin was a bit of a worry but he was going to check
that and get back to me. I wasn’t convinced that radiotherapy shouldn't be an
option and I wanted some sort of assurance about regrowth, metastases likelihood
vulnerability of the other side and stuff like that.
Now, you must understand that this was what I heard.
The fact that I was very probably offered a full mastectomy somewhere along the
line I did not hear. The fact that my questions remained unanswered so
unsatisfactorily could well have been because they were poorly constructed.
I honestly don't know. My surgeon presented as anything but a fool and it is not
my intention to malign this man.
The issue here is as a consumer THIS was my reaction. Everything is always much
clearer in hindsight isn't it?
Anyway my cocoon was too small, too dark. I had now had time to digest my
situation and was able to think more clearly. I need more information. Since the
Internet was so overseas dominated I tried CINAHL and MEDLINE, looking for
recent publications praying for anything local.
I was not happy with the idea of taking Tamoxifen, I was not convinced that
radio therapy was not an option. I wanted a bit more control. This was my body
we were fart arsing about with but where was my input?
I research Tamoxifen and chose not to fill the scrip. As a matter of fact there
was a journal supplement on Tamoxifen that was only available in Australia in
either Newcastle or Melbourne. My son took a day off and drove to the Mater in
Newcastle and photocopied what I wanted and drove home again as a surprise for
me. I already had a huge swag of articles, these were purely additional, but
here was another example of the sort of support that was forthcoming for me at
home.
I chose to avail myself of the cancer support service offered by the Adventist
Hospital at Wahroonga.
As last I stumbled on two articles written by John Boyages and colleagues!
Local and recent! Not only that they seemed to be talking about all the things
that concerned me. I wrote to them at Westmead Hospital not really quite knowing
what to expect.
And here patient readers, is where I can correct my analogy and change my cocoon
to a chrysalis!
This is where my choices made the transition.
This was where I became a team member.
I had assumed that I would be offered radio therapy. Instead I was confronted
with some BIG BIG choices.
My lopsided nippleless look was not the best option. The tiny bit of areola that
had been left was too close to the original bud.
There was no doubt about what our four ears heard this time.
See how far I'd grown and learnt by now!
Extra ears, extra support.
My genetic history compounded the problem. Grandmother Mother Sister all having
had breast cancer, the two latter dying at young ages.
My choices basically boiled down to
* another lumpectomy
* full left mastectomy
* total bi-lateral mastectomy.
Oh Boy!
BUT, choices they were. All options were discussed, no questions were side
stepped or unanswered, there was no pressure, no one stood over me. If I was
sitting, they also sat. It's just amazing what a difference that body language
can make in a stressful situation.
I chose to see the geneticist and to donate any tissue for research, but I also
chose not to know the results of the blood tests.
I chose to have the total bi-lateral mastectomy after much soul searching. I
chose the prophylactic approach just on the odds I short of knew were stacked
against me. No pun intended, but there are just so many bites at the cherry that
I thought I could bear!
However the prophylactic choice was difficult. How could I ever be sure that I
had chosen wisely? Owen Ung used his sultana in loaf of bread analogy, there may
be a spot as tiny as a sultana that pathology could miss as they sliced through
the tissue. A visual picture and no doubt very well meaning but here we were
talking about the only fatty tissue that I've ever had that I liked. My poor
loaves of bread!
I must just add that his analogy of gently blowing on a pile of fine grains of
sand do demonstrate the possible formation of a metastasis, also very visual was
somewhat easier to appreciate!
Anyway I also chose at this stage not to have the reconstructive surgery that
was offered to me as a part of the multidisciplinary service. A decision made in
anger!
That was how I celebrated St. Patricks Day this March.
The hospital horrors were not repeated. Now I was now a member of a team, a team
that had my best interests at heart!
I retained by identity my dignity and my sense of humour.
I chose not to wear any prosthesis. I tried out the rabbits ears I was given in
hospital and they made my feel I dismantled my body again every time I
undressed. I simply did not feel comfortable about the idea of strapping bits of
rubber to my person.
As I said I had chosen not to have any sort of reconstructive surgery, but I am
now finding my self image needs a bit of a boost and I have seen a plastic
surgeon who also adopts the team approach.
So, there you have my story.
From caterpillar through the fragmented maze of treatments to the rebirth of
such an excellent prognosis it really can be equated with the stunning beauty of
the butterfly.
Before I finish, I feel I must labour a few points:
* Decision making is a major factor in DCIS.
* There is too little literature available on DCIS to really make an informed
decision.
* Even in the booklets that you hand out DCIS hardly rates a mention.
* The lack of a physical lump makes it more unreal. Such sinister proliferation.
* The significance of an itchy nipple is not published.
* To be told that you are pre-cancerous is totally confusing.
We need to be given the range of options, and we need our option to make us
equal members of a team.
We need to spend as little time as possible inside that cocoon.
The clarity of explanation that come from the Westmead Team, John Boyages, Owen
Ung, Beverly Hunt etc really should be available at the time of diagnosis.
I deliberately laboured my fragmented pathway of choices as your expertise at
the diagnosis stage needs to be extended. The infra structure is already is
place for a co-ordinated truly multidisciplinary approach to care at the breast
screening centres.
I have posted off a few letters to our Ministers of Health, State and Federal
about this need. I finally had a reply. In part it says, "Under Breast Screen
Australia, women with histological or cytological confirmed breast cancer are
offered counselling and are given the option of referral to a treatment clinic
specialising in the treatment of screen-detected breast cancer or returning to
their nominated GP for referral to an appropriate surgeon."
Perhaps this is the case. Perhaps I was offered a treatment clinic. I don't
know. I do not recall this as an option. But as I said, I only heard with two
ears and in emotional situations two ears are sometimes not finely tuned.
The reply also states, "a trial, announced on 20 February 1998, will be run over
a 27 month period. Specialist centres will use the multidisciplinary approach,
establish local protocols on nationally agreed evidence base guidelines
subjected to ongoing audit" etc. etc!
Silly me! I read this as if trials announced on 20 February had been established
and were underway.
BreastScreen NSW took several very cooperative days to locate information about
this for me. All this high sounding, gobble-de-goop boils down to submissions
for request of interest for a possible 3 only, NATIONWIDE demonstration sites!
Three only demonstrations sites in a country as large as Australia are about as
effective as a toy boat!
The maze of information gathering and treatment procedures of my story is by no
means unique. If I can do anything to help to rescue the breast cancer journey
from a confirmed cocoon to a more transitional chrysalis I would very much like
to do so.
Source :
http://www.bci.org.au/public/stories2.htm
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